Newly diagnosed with very high numbers - confused by symptoms

[Smallbrit]

All I can say is... hang in there. You're doing an excellent job reducing carbs. And numbers frustratingly seem to plateau after an initial drop. And then it creeps at snail's pace downwards. But that has taken me months to get down to this point, and it took weeks when I first started this no carb thing a few years ago.

We seem to be on a similar journey....I'm currently working on lowering HBA1c taken in April of 88. I've been up and down this road a few times though. I tend to yo-yo with food and increase carbs (majorly) when bad things happen in life. I know what to do... but don't always do it, obviously. My app now says I'm at 59.8, with numbers similar to yours above. I cheered this morning when I got 7.8 as my morning reading... it's dropped 6 points over a month.

What you're feeling does sound like Keto flu.

I saw my first number below 6 for quite a while a few days ago... all of these things are wins! It's so exciting when you see a lower number than you were expecting!

 

[jjne]

Thanks Smallbrit, that really does help. I would kill right now for a number below 6 lol. I have had a couple of 8.3s (mainly late at night) and those filled me with (ultimately false) excitement, but hopefully those will become more common.

The great thing is that I am now firmly in the not craving for food mode, and this bodes well for the future. I can go without food for hours and hours and not feel hungry. That is a very weird feeling but it's good for me

I have an avocado in the fridge that's a week past its best before date and am going to eat it today, but I feel no urge to raid the fridge.

BTW does anyone know how to change the HBA1C estimate in Diabetes Connect from the old to new numbers? I'm becoming an expert at converting what it says to the number the doc uses but it would be nice not to have to. Everything else is in mmol/l and metric so it's odd that this one measure is US...

 

[jjne]

Interesting.

I bought a ketone meter to verify if I was in ketosis.

Result was 4.0mmol/L.

Do I need to speak to my doctor urgently?

From what I can make out, if I'm a "vanilla" T2 then this is good, my keto diet is working and I should continue.

If I'm an undiagnosed T1, however, this could be a sign of DKA and I need urgent medical help.

Bit worried now, I wasn't expecting a result of that nature.

 

[HSSS]

I’ve just seen you posted this quite some hours ago. How are levels now? How are you feeling?

Are you still on just metformin? Has anyone said anything more about type 1 other than simply because you has a high Hb1ac?

And it seems you are almost zero carb yes? In your shoes I’d personally try eating a few carbs and see what happens to ketones but being hyper aware of feeling ill in any way, ketones rising any further at all or bgl rising significantly or rapidly. In which case I’d get medical advice promptly.

It’s probably unlikely to be dka if your type 2 but it’s not something you’d want to guess wrong on at all - better safe than sorry. A drop in ketones would indicate nutritional ketosis in my mind whereas I don’t think dka wouldn’t respond as it would be about lack of insulin not lack of carbs. But I am not a doctor and can only say what I personally would do. You should make your own choice.

If anything deteriorates, and you seek help, do point out that type 2 has been assumed but type 1 mentioned and importantly that you are on a keto diet with barely any carbs.

And this does emphasise the point you need clarity on type from whoever mentioned type 1 (or another competent medical source that knows you) so you know how to approach ketosis in future. Get the c peptide and antibody tests done

 

[jjne]

I am on metformin only, yes. No other meds.

There hasn't been any concrete evidence of T1 other than the high a1c no. But I am in for CT scan on Thursday. I have a phone appointment with surgery on Monday to discuss thus. I spoke to a non-specialist nurse earlier who didn't seem overly concerned as she, along with the GP is highly confident it's just T2, but they aren't the experts here.

Unfortunately I only had a single ketone strip. I didn't deem it necessary to buy a quantity of them at the time.

I have the cheapo urine ones (also arrived today but they're nowhere near as accurate from what I've read) and will check those later.

This wouldn't bother me but the 4.0 is definitely well on the high side. I was expecting it to be somewhere around the 0.5-1.5 mark really.

I'm not suffering any nasty symptoms, but will keep a close eye on it.

 

[HSSS]

As I’m sure several of us have said high Hb1ac can occur with both type 1 and 2 so we’re a little confused how this indicates type 1 to that dr. It’s good you’re have a scan for caution but again I’ve never heard of a scan being used to diagnose type. It can look for damage though which might indicate type 3c (which has the same effect and treatment as type 1usually). The usual way to confirm type if there’s any question would be antibodies and insulin production levels (via a c peptide test usually)

Glad you took some medical advice. Please keep a close eye on things and use those urine strips til you get some more blood ones. Better than nothing.

have you counted how many carbs you’re actually having now?

 

[EllieM]

Diabetic ketoacidosis - NHS - NHS (www.nhs.uk)

What levels were the urine strips giving?
I'd be tempted to call 111 for advice, or have you already done this?

Good luck, stay well.

 

[jjne]

Hi,

The strips were giving something similar. Something between the 1.5 and 4 shade. I'll keep an eye on it.

 

[ickihun]

Hi,

The strips were giving something similar. Something between the 1.5 and 4 shade. I'll keep an eye on it.

CT scan can pick up damage to your pancreas. Are you high risk to that? Heavy drinker or losing weight dramatically?

 

[jjne]

CT scan can pick up damage to your pancreas. Are you high risk to that? Heavy drinker or losing weight dramatically?

Nope. Haven't had a drink in years, and even then it was a couple of cans of beer. Hate the taste so never developed a habit. I did get plastered a few times when I was a student but we're talking literally only a few dozen times in my lifetime I could genuinely describe myself as drunk...

Don't smoke either and never have.

My "vice" up until a couple of years ago was takeaways (parmos and curries in particular), but even these were deleted last year when I feared COVID and stopped buying them.

Losing weight... Well I have lost a fair bit on this keto diet, but generally no.

 

[KK123]

So it's normal for the pancreas to essentially sit around and not release insulin during the day if a person does not eat? As that seems to be the implication here.

Just seen this post so not sure if anyone answered it. It's not normal for a pancreas to sit around and not release insulin in the absence of food, that is why we type 1s have basal (background) insulin. Even without food a body will release glucose in response to life generally, ie, stress/exercise/going up the stairs/having an argument etc, etc, so in a 'normal' person it releases as much or as little insulin as it needs every second of every day to combat any glucose rise without food. x

 

[ickihun]

Nope. Haven't had a drink in years, and even then it was a couple of cans of beer. Hate the taste so never developed a habit. I did get plastered a few times when I was a student but we're talking literally only a few dozen times in my lifetime I could genuinely describe myself as drunk...

Don't smoke either and never have.

My "vice" up until a couple of years ago was takeaways (parmos and curries in particular), but even these were deleted last year when I feared COVID and stopped buying them.

Losing weight... Well I have lost a fair bit on this keto diet, but generally no.

You're like me. Very very careful. Your results should reflect that. Mine have so far.
For me my childhood was been damaging but I'm slowly undoing all the damage.
I'm sure I read somewhere a keto diet 'can' mimic hi ketones. @Brunneria might know more?

 

[ickihun]

Just seen this post so not sure if anyone answered it. It's not normal for a pancreas to sit around and not release insulin in the absence of food, that is why we type 1s have basal (background) insulin. Even without food a body will release glucose in response to life generally, ie, stress/exercise/going up the stairs/having an argument etc, etc, so in a 'normal' person it releases as much or as little insulin as it needs every second of every day to combat any glucose rise without food. x

I'm on basal only and metformin. Other than times where an infection takes my bgs alot higher.
Maybe I'm due another C-Peptide test.

 

[jjne]

Done a couple of urine ketone tests today. They both seemed considerably paler than yesterday, down more in the 1.5 mark than the 4.

I did have a bit more carb in yesterday's meal as suggested. Low but closer to the full 20g.

Is a short term "Spike" in ketone levels a thing?

 

[KK123]

Is a short term "Spike" in ketone levels a thing?

Yes! When I was keto, mine shot up and down almost as fast as a glucose level. In the morning it could be 1 and by the end of the day 3 and vice versa.

 

[jjne]

Yes! When I was keto, mine shot up and down almost as fast as a glucose level. In the morning it could be 1 and by the end of the day 3 and vice versa.

Thank you. I have bought more of the blood ketone strips so will check every few days.

Had my CT scan just now. Blood sugar has spiked by around 3 points to the highest it has been for weeks. I'm assuming the fluid they inject you with is sugar based which would account for this?

 

[KK123]

Thank you. I have bought more of the blood ketone strips so will check every few days.

Had my CT scan just now. Blood sugar has spiked by around 3 points to the highest it has been for weeks. I'm assuming the fluid they inject you with is sugar based which would account for this?

My guess would be the stress of having the scan! You may not even be aware of it but it's there. Stress releases all the hormones, cortisol, adrenaline etc....and a big old dump of glucose because your body thinks it is going into fight or flight mode and 'helps' you accordingly. It really isn't just the carbs/sugar ingestion that raises your levels, the body is a complex and wonderous thing albeit bits of it may be wonky. x

 

[jjne]

Ketone are lower. Only to 3 but they aren't going out of control. I think I'm in the clear.

And the CT Spike has returned to relative normality. So my pancreas is clearly doing something right!

Starting to understand the way the system works a little better... thanks KK123

 

[jjne]

The spike actually highlights something that confuses me.

If my system is capable of dropping 2.5mmol/l in a couple of hours, what is possessing it to stop there and not reduce to 7?

It's all very weird...

(This is a rhetorical question btw, I'm not expecting an answer! The simplest answer is there was no spike and my meter is playing silly buggers again).

If the stakes weren't so high I'd go out and buy myself a half-pound bar of chocolate, eat it in one go, and see how long my 20+ reading takes to return to normal. But I fancy keeping my sight and my feet a bit too much for that!

 

[lucylocket61]

If my system is capable of dropping 2.5mmol/l in a couple of hours, what is possessing it to stop there and not reduce to 7?

our bodies are used to a baseline, and it takes a while for it to get used to the need dropping, and let our baseline reduce.